Experience AURA or AURAS?

[qtowngirl]

it's not 'impossible' to experience all 4 but is not common. in general one with s.p.'s suffers from two of the four (usually tends towards being a physical seizure, or towards a mental seizure), with only one or three also a possibility.
all four at once (is this what you're thinking for yourself?) is pretty extreme, possibly a simple partial and other type of seizure back to back, and should be explained in great detail to your neuro.
fill me in a bit if you like on what you're relating to in each of the four categories.

nocturnal means 'occurring or active at night.' many with e have nocturnal seizures only, which has a good and bad side that conflict each other- at night it's more likely than not that one is in bed or at the very least at home (both safer than in public); bad is that they can happen in one's sleep, sometimes making it difficult for those around you to time it and watch for the seizure to stop (them not waking up).
especially for those who live alone (if they're tonic clonics it's high risk to have them alone, in case one goes status).
HUGS you.

 

[MAB]

it's not 'impossible' to experience all 4 but is not common. in general one with s.p.'s suffers from two of the four (usually tends towards being a physical seizure, or towards a mental seizure), with only one or three also a possibility.
all four at once (is this what you're thinking for yourself?) is pretty extreme, possibly a simple partial and other type of seizure back to back, and should be explained in great detail to your neuro.
fill me in a bit if you like on what you're relating to in each of the four categories.

nocturnal means 'occurring or active at night.' many with e have nocturnal seizures only, which has a good and bad side that conflict each other- at night it's more likely than not that one is in bed or at the very least at home (both safer than in public); bad is that they can happen in one's sleep, sometimes making it difficult for those around you to time it and watch for the seizure to stop (them not waking up).
especially for those who live alone (if they're tonic clonics it's high risk to have them alone, in case one goes status).
HUGS you.

I usually experience phantom odors and frequently I preceive a physical sensation that isn't real, such as weakness in my left arm or leg. Occasionally my left arm pit will twitch also.

A few times in the middle of the night I would see things or hear things that were not there but that may have been dreams. I wouldn't go as far as to say those were aruas for sure.

I just wasn't sure if what I experience in the middle of the night is related to partial seizures or just strange dreams.

 

[nelly]

I experience fear da ju vu and extream fear (not justified) and my mouth feels weird.
if in bed I can bite my pillow or my blanket if in public I clench my teeth together.

 

[qtowngirl]

I experience fear da ju vu and extream fear (not justified).

awful. awful awful AWFUL. have had well over 1000 of those and that constant hellish experience definately shaped who i am. i feel your pain all the way on this nelly, would have given anything to not grow up (since 15) like that. ughhh bleh ick %&&%$*!

MAB: the only way to be sure (really sucks as it sometimes takes several tests) is to do it through your neuro. if you have them at night see if they'll sched a very early morning eeg, or even better a 24-hour ambulatory to wear at home.

 

[nelly]

gtowngirl,

Happy to know that someone understands these awful episodes. and yes it does shape who we are today. I've had brain surgery 11 years ago. but still experience these once in a while and I'm still on meds.

 

[qtowngirl]

HUGS. that's the same crappy situation i'm in, if my seizures come back (only 4.5 months post-op) i can't fathom the thought of it being s.p.'s again. not that i'm keen on grand mals either but when you have 13 of something and over 1000 of something, it's likely which one i'd pick. HATE them, had enough that's for sure

other than that how's your surg working out? just the simple partials?

 

[PFunk]

awful. awful awful AWFUL. have had well over 1000 of those and that constant hellish experience definately shaped who i am.

Q, you would have hated the time I had deja vue of having deja vue of having deja vue. It kept on going, like when two mirrors are facing each other.

I have to say, as an experience, I don't mind them. As a little kid, I thought they were amazing. It made me believe there were magical things beyond this realm that I couldn't comprehend....

 

[nelly]

Surgery was successful. no more s c seizures where I am unconcious. I first had s p as a child, then in my 20s started simple complex- and tonic clonic. I was in couple of car accidents. scary didn't see it coming. Im thankful that I didn't hurt anyone or myself. I went to see a specialist. I was immediatly a canidate for surgery. The recovery was awful. I traded complex seizures for severe depression. don't know which is worse?

How about your E?

 

[qtowngirl]

156 days seizure free today. started having s.p's at 15 and grand mals at 25 (in the past 10 years 13 of them plus 3 in the seizure unit while very underslept and off meds for a week). they were among the worst i've ever had poor tongue. and waking up in a room full of nurses asking you to say and do stuff sucked too. waking up in your own bed is much better, but it was for a purpose
have had a few 'weirdish' feelings in the past few months but certainly not seizures, after having so many s.p's i can certainly tell the difference. poor head ey, trying to learn itself again.

 

[MAB]

156 days seizure free today. started having s.p's at 15 and grand mals at 25

Congrates on being seizure free for 156 days!

So since I have been having partial seizures for 3 1/2 years, that means I'm at a higher risk of having grand mals or other types of seizures? If I keep the SP under good control can that reduce the risk of other types of seizures?

 

[qtowngirl]

thank you mab!!

the main things that make seizure risk higher...
-medication losing its ability to work at the current dose (which we unfortunately don't realize until a breakthrough seizure - which for the most part are considered a grand mal).
-unavoidance of your own known triggers or pushing boundaries on the top seizure causes (lack of sleep, stress, and alcohol/drugs).

partials under 'good control' are a real plus, as they are unavoidable for many no matter we do. it greatly needs to be nurtured tho aka being strict w/yourself, focus on your triggers, and NEVER missing your meds.
with epilepsy we're always at risk of a seizure, regardless of type, medication, and brain surgery. hence being incurable. but, we're at a higher risk if: we don't take care of ourselves (which includes regular doctors visits), and also the longer we have it- brain damage happens with one/every seizure. the more years we have it, the more damage.
at 19 years with E my head was a mess, uncontrolled szs for the first 9. if you've been having szs 3.5 years and follow all the necessities, you don't get 'put' in the high risk category.
it's overwhelming how diligent we have to be, one bad decision can put us in that category- doesn't take much.

 

[Penny]

My auras are always the same. I get an extreme fear (almost like a panic attack but a little worse) rising up in me, then everything looks VERY clear around me, then I get de'jevu and then I feel like I am rising out of my body looking down on myself and then everything goes black. Sometimes I go into a complex partial followed by generalized seizure or just a CP or sometimes that all. Usualy a CP. For sevral months after my stroke I just had the auras and didn't know what they were until I had a "big one" that sent me to a nueru and he told me it was a seizure too.

 

[malibu1966]

Does everyone get Auras all through the day. Or just at certain time of the day. Mine are just a certain smell that lasts 4 or 5 seconds. But I might have 40 or 50 a day.
They are not consistant like people say (burning tires). Next week maybe a new one altogether. Also could this be from my meds?

I have not been fully diagnosed on why my seizures occur. I am having another MRI hopefully this month.

Sorry to ramble on but its just driving me mad. On the other hand I think an Aura is 10 times better than a seizure!
Doug

 

[N Sperlo]

I used to have many a day, Doug. Usually they were very similar, though. Dizzy, deja vu, etc. Very very quick.

The only thing I think your medicine may have to do with them, is that it is keeping the partial from progressing into anything more. You may be remembering them when before you didn't.

I agree. I prefer an aura to a seizure any day.

 

[Melanthanie]

I've always felt a kind of weird vertigo, followed by the smell of ammonia, and flashing lights in the corner of my eye. It's always felt like it lasts much longer than a couple of minutes, but it's hard to be sure honestly.

 

[Mflint]

I have auras before a seizure. I also have them without a seizure.


Sent from my iPhone using Tapatalk

 

[MAB]

I've always felt a kind of weird vertigo, followed by the smell of ammonia, and flashing lights in the corner of my eye. It's always felt like it lasts much longer than a couple of minutes, but it's hard to be sure honestly.

I think the smell of burning ammonia is the worst olfactory smell I get. I can even feel it burning my throat.

 

[MAB]

I have auras before a seizure. I also have them without a seizure.


Sent from my iPhone using Tapatalk

If you are having auras that don't lead to anything else the auras are simple partial seizures. I took a long time for me to be able to wrap my mind around that.

 

[qtowngirl]

If you are having auras that don't lead to anything else the auras are simple partial seizures. I took a long time for me to be able to wrap my mind around that.

hi mab (this is for flint as well )

whether the simple partial does lead into another seizure or not, it is still a simple partial seizure. some professionals use 'aura' and some don't, it is simply a personal preference of theirs. pardon the pun.

using only the word 'aura' is very misleading and we've talked about it on here before, it should be made clear that tho it can sometimes be referred to as that, the actual type and medical meaning of this is a simple partial seizure.
those of us that have lived a life of simple partials get frustrated with this type of misleading, and for anyone who is going through it it's only right that you know that regardless of the seizure outcome, it is a simple partial.

 

[Zolt]

Thank God for Auras, that way i can reach for my emergency pills.

Mine are numbness, tingling/pins and needles feeling in my fingers. I'll drop things i'm holding when that happens.

Worst time it can happen is when one is sitting on the can, and can't wipe because of those feelings in the hand that wipes. Doh!@#$

Sometimes i get what i call false auras, that feel like an aura, but doesn't go anywhere. I look at it like firecrackers going off. The time the auras happen, only one or 2 firecrackers go off, then some more go off, then some more, then eventually the whole strip of firecrackers goes off.

iano: op: